I love your sense of humor! It has been noted before that elongated styloids do look a lot like elephant tusks. A very thick one would indeed look more like a rhino’s horn. I also enjoyed your perspective of the styloid being stuck in as an afterthought. That’s a first but made me laugh!
As far as pain meds for post op patients, opioids are usually prescribed PRN for the first week-month after surgery. Many people have found they don’t need that level of medication & can simply take Extra-strength Tylenol (acetaminophen) instead. Most doctors recommend staying away from ibuprofen for abt 10 days post op since it’s a blood thinner in addition to pain reliever. If the pre/post op nerve pain is intolerable then nerve pain meds such as Gabapentin (Neurontin), Amitriptyline, & others can be prescribed. There are two families of nerve pain meds - anti-depressants & anti-seizure meds. There are many sub-categories w/in each of those so if one type doesn’t work, another in the same family can. It can take some trial & error. We do have a number of members who take nerve pain meds to keep themselves more comfy. As much as we hope surgery will be the perfect cure for everyone, it isn’t always, & some lingering nervy symptoms can persist hence the need for low dose nerve pain meds.
I love your sense of knowledge
I received a anti inflammatory jab after a cat bite, it was unbelievable how effective this was
Can’t take in tablet form as it is too hard on the stomach
Getting a Dr to listen has been the hardest part, ENT told me it was wisdom teeth
And I wait for a ENT appointment again so I still have not yet a proper diagnosis but I know 100 percent what it is
So I asked the Dr if he knew what Eagles Syndrome was? He said no, so I asked him if he gave me €50 I will enlighten him
So he googled it
I showed him instructions on how to feel my tusk with a finger but he declined and admitted it was a strong possibility.
Another Dr told me ‘go home and suck it up’
Probably thought he was treating a vacuum cleaner with a full bag of dust?
My nose is big but not that big
So I wait
And I keep reading stories on here
I am grateful for all the feed back
Is reassuring to read all the positives
Wish i could snap this bone and withdraw it through a small hole in the mouth and save me all the hassle
If i can cut my own ingrown toenails how hard can it be?
I’m still in the shock stage of how gruesome this bone looks when its been removed, and how much trouble the little b#####d causes!
I’ve been away so am joining your discussion a bit late! I had bilateral jugular compression caused by the styloids- because the jugular veins were being squashed, blood could go into my head okay, but not come out, & that raises the pressure in your brain (intracranial hypertension). I had brain fog, a constant off balance feeling, dizziness, feeling a bit drunk all the time, tired…pretty much what you’re describing. So it could be caused by ES. As others have suggested a CT with contrast / CT venogram would be helpful to show what’s going on.
Hope you can get some answers soon…
I just want you to know you are not alone. I get severe and I mean severe derealisation or spaciness (whatever you want to call it) I honestly thought I was going mad!
I went from a very sporty active 32 year old to a cabbage for the past 2.7 years. It’s hell and you are not alone
I constantly feel 24/7 like I have a plug or tight band deep within the back of my occiput and neck that is stopping flow and my brain and head and eyes feel like they are imploding with pressure and I’m woozy, floaty but heavy feeling all at the same time. My visual spaciness improves slightly late at night with low lighting.
If I stand from kneeling I get a rise in pressure up through my neck, throat and head and I’ve said it from early on before I even knew about jugular compression or any of this. That it feels like a river of fluid trying to push through a pin hole. When it reaches my head I go severely dizzy then I can hear this rythmitic whooshing of fluid like a Doppler. Voomp voomp etc
I have endless other symptoms but the spaceyness and physical visual feeling like I’m detached/ dreamlike/drunk is with me 24/7 in varying degrees
I pray for you that this nightmare will end once you have surgery.
Just wanted you to know you are not alone with this symptom
Thanks Natty04
Is really sad to here how bad you are with still no real diagnosis I feel for you and all the other sufferers, on here ,and we all try to trying to carry on as normal.
We got to keep on going, that’s the hardest for me,I thought after a cycle last night that my heart was going explode, work today was torture , all I wanted to do was take drink and drown my sorrows, but I didn’t and I must work tomorrow , massage helps , I can restrict blood flow very easily almost to the point of passing out, by pushing on the bone, I have a wooden bed with a round pole at the foot end
Rolling my neck on this side to side helps
Are you any nearer to a diagnosis?
The penny dropped for me when the bone started to poke through the mouth
If it hadn’t then I would still be treated for fibromyalgia possible MS being a hypochondriac anxiety and other things.
My injured cat bit the other week so in A&E they gave me a anti inflammatory jab and this was the best I had felt in a long while
Fatigue momentarily was gone, don’t know why, maybe how I twisted, not sure
I split logs with an axe otherwise we couldn’t cook on the stove, the amount of anger I put through the axe is astounding
As difficult as it is to exercise I still do out of spite
If I listen to my body I’d never get out of bed
Thanks for your response and prayers
I pray you get sorted soon as possible too
If I could get financing I would trade these worn out body in for a 2020 model
I need a rewire, complete overhaul and a new engine, can’t start in the morning, down on power paint is faded and the exhaust is blowing.
I feel sad for us all
Maybe steroid/ lignocaine injections into the styloid area would help you, as the anti-inflammatory injection helped? They help some members, but not everyone…I don’t know if your doctor would do that- or if you could get another appt with him without waiting mo ths?!
Thanks @anon22211586 I’m hoping I’m close to a diagnosis of vascular eagles, from what my imaging shows. But not 100% until they tell me next week
It’s a rough rough old slog isn’t it! I can’t drown my sorrows away as alcohol makes my head and vision even worse but great that you didn’t. Alcohol will only make you feel worse.
I relate to your comment about exerting yourself. The more I do the worse I am but sometimes I push myself too hard because I can’t stand these symptoms having a hold on me.
Oh yes a new brain sounds wonderful and new body If it’s on offer. What we would do to have energy and a clear head again eh!
And to you also
Sounds like it won’t be long before you find out? Finding out made a big psychological difference to me
I hope it does for you
It’s a hard slog but we are hard enough to take it
Fight on!
Thank you for great summary of issues encountered and explained by ES. I am new to ES, but just had what may have been my worst week of brain fog ever. Hit every day of week. Would come on with aura like a migraine and last from 30 minutes to 6+ hours. For me, ok for a few hours than same again. Have been having this for years, but meds for other
medical issues allowed me to be better for a year, until 2020. Then problems really exploded. I am replying to this text thread, but could have stated same thanks to many other posts for connecting dots. I am bilateral 6+ each and bilateral calcification.
What I am most thankful for at this time is a great set of reference symptom descriptions. Worst is when you’re trying to describe all issues to a Dr and lose them after 1 or 2. I also find those that try to help me confused why I can’t real all symptoms off top of my head. In a lucid moment with a good friend that helped me realize how long I have had these issues, various specialists at a loss for answers and personal will to ignore it and try and enjoy life like I used to by ignoring them and being positive even when you could break down sobbing any minute if you ignore reality. Works until it gets progressively worse & worse.
Again, true thanks to all contributors of discussing brain fog and fatigue. Cuttingbthis short as losing functionality quickly again
Hi RBeacher, I too have experienced frequent atypical migraines (not pain but foggy, surreal feeling) from ES. Initially I thought this was too high a dose of gabapentin, but eventually I figured out that they were helped by more of the drug (plus some caffeine). I hope you get some answers soon.
RBeacher we can relate to what you are going through
I’m at work this morning and was ok , now the switch has been moved and I’m only fit to drop
Is like dragging around a ball and chain
Is like bad blood in the brain or I’m stoned or something
It can wear you out , symptoms vary for me depending on where the bones are
But we can’t be beaten, wish I could give us all a cure remedy, boil up rats blood and mix with these herbs and bingo we are sorted
I tried it and only gave me the shits
The rat died for nothing
We have to get the bones removed, like the professor said last week
If you have ES then the only solution is surgery, and not intraorally he stated
Hope you get sorted soon as
I’m looking at broken trucks and all I want to do is lie in bed now and stare at the ceiling but I can’t
Fight on
We drag you along if you fall down
The bus don’t leave until everyone is on board plenty of space above your seat for the bags of meds you bring with you, no one gets left behind😂 And you must sing a long to the bus driver
Es tour bus stopping in a town near you.
Is a mystery tour, don’t know yet where we going yet.
Best suggestion gets to sit at the front and pick the songs
Any word yet from the surgeon who may be helping you? I know you may have to wait a bit, but it sounded like Prof Fenton was going to try to push things through faster for you.
Hi Isaiah I’m waiting on Dr Spoc and his team of clingons in Cork to evaluate my condition
In the meantime I sit here kind of spaced out with brain fog wondering will I be able to put in a six day week , or not🥱
Hi optimistic, vagus nerve compression can cause fatigue. As it plays a role in wake/sleep cycles among many other things. It exits the skull with the internal jugular vein and in some cases of ES can be compressed between the styloid process and transverse process of the atlas.
Hi sigmet25
It has to be, I don’t even know when my stomach is full, I’ve eaten a ton of food and still starving
my brain has communication problems with my organs for sure.
We don’t live on a bus route otherwise I’d throw myself under it!
It’s getting worse
Going to Dr Spok and have scotty beam me up
Need to gain a bit more strength and push on.
Thanks for the reply
Need to be absent from my body for a while
but I can’t
